Domain 4 - Emotional & Practical Support for Patients/Families

  • Elicit and attend to the needs of the dying person and his/her family:
    • Attending MD and other clinicians continue to meet with the family of a dying patient as appropriate to emphasize comfort care and to convey non-abandonment.
  • Distribute written material (booklet) for families that includes: orientation to the ICU environment and open visitation guidelines; logistical information (nearby hotels, banks, restaurants, directions, etc.); listings of financial consultation services; and bereavement programs and resources:
    • Develop written materials described above.
    • Ensure consistency in the distribution of these written materials.
    • Develop guidelines for children and pet visitation.
  • Facilitate strengthening of patient-family relationships and communication:
    • Support open visitation to accommodate patient and family needs.
    • Talk to patient and/or family about young children's and grandchildren's needs and provide appropriate supportive referrals.
    • Encourage family and loved ones to talk to the patient regardless of the patient's level of consciousness.
    • Clarify family's desired level of involvement in patient's physical care and involve as appropriate.
    • Reduce unnecessary patient sedation, while ensuring adequate treatment of pain and anxiety.
    • Use consistent scoring system for assessing and titrating sedation.
    • Provide access to telephones for patient and family.
    • Consider making pager or beeper system available to family members so they may leave the ICU more comfortably knowing that they can be reached quickly, or document family cell phone and pagers in the medical record for easy access.
    • Consider offering a toll free number to patients and families to facilitate long distance calls.
  • Maximize privacy for the patient and family:
    • Move the patient to the most private area of the ICU.
    • Consider transfer of the patient from the ICU for more privacy, if feasible and desired by the patient and family.
    • Provide comfortable chairs for family members in the patient's room.
    • Provide a private room with toilet articles near the ICU for family to place their belongings, wait and rest.
  • Value and support the patient's and family's cultural traditions:
    • Provide staff with an overview of various cultures' significant rituals around death and dying.
    • Allow for cultural differences in dying rituals and body care after death whenever possible.
    • Arrange culture mediators and/or consultants where appropriate.
  • Arrange for social support for dying patients without family or friends:
    • If patient wishes and is conscious, request appropriate pastoral care representative or trained volunteer to visit.
  • Distribute written material (booklet) to families containing listings of bereavement support programs/resources:
    • Ensure consistency in distribution of these materials.
  • Support the family through the patient's death and their bereavement:
    • Clinicians lend their physical presence and support to the dying patient and family, whenever requested.
    • Explore the family's wishes about being at the bedside if life-support is withdrawn and/or during the dying process.
    • Discuss issues of funeral arrangements, release of the patient's body, etc. (if possible and appropriate) prior to death so that during the dying process and immediately after, the family does not need to make these decisions and may have a quiet time.
    • Provide a private room for the family after the patient's death.
    • Give family the opportunity to meet with the health care team after the patient dies.
    • Send a preprinted card of condolence signed by the health care team to the family after the patient dies.
    • Consider making phone contact with the family one month after the patient's death, if circumstances permit.

Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families.